119例SAPHO综合征患者的临床治疗研究

Treatment of 119 Patients with SAPHO Syndrome

目的了解滑膜炎、痤疮、脓疱病、骨肥厚和骨髓炎(synovitis,acne,pustulosis,hyperostosis osteomyelitis,SAPHO综合征)的临床表现和治疗现状,探讨目前可行的治疗方案。方法于2015年3月进行问卷调查和电话随访138例就诊于北京协和医院确诊为SAPHO的患者,分析其临床表现,了解其骨痛的控制情况及既往的治疗情况,并对治疗药物的满意度进行调查。结果发放138份问卷,回收119份有效问卷。既往药物的使用率由高至低分别为:中草药、非甾体抗炎药、白芍总苷胶囊、改变病情抗风湿药、糖皮质激素、抗生素(非米诺环素)、口服双膦酸盐、米诺环素、抗肿瘤坏死因子-α拮抗剂、复方甘草酸苷,其使用率分别为89.9%、77.3%、67.2%、61.3%、55.5%、48.7%、35.3%、33.6%、26.1%、22.0%。治疗后57.1%的患者骨痛控制满意。药物满意度评分由高到低依次为:非甾体抗炎药为,糖皮质激素,中草药,抗肿瘤坏死因子-α拮抗剂,改变病情抗风湿药,米诺环素、抗生素(非米诺环素),白芍总苷胶囊,复方甘草酸苷,口服双膦酸盐;其满意度分别为84.8%、77.3%、72.9%、67.7%、47.9%、47.5%、46.6%、45.0%、34.6%、26.2%。结论目前SAPHO综合征的患者骨痛的控制并不满意,只有57.1%的患者疼痛可以得到控制;所有药物中非甾体抗炎药、糖皮质激素、抗肿瘤坏死因子-α拮抗剂和中药都有较好的满意度;值得一提的是中草药的使用率89.9%,满意度72.9%,可能作为治疗SAPHO综合征的一种新方式。

Objective Understanding the clinical manifestation and current treatment of SAPHO syndrome （synovitis, acne, pustu- losis, hyperostosis steomyelitis） , and to explore the diagnosis and treatment of the feasible solution. Methods In March 2015, the ques- tionnaire survey and telephone were performed with follow - up of 138 patients diagnosed with SAPHO syndrome in Peking Union Medical College Hospital. Analysis of the clinical manifestations, understand its bone pain control and treatment, and the satisfaction of therapeutic drugs in the investigation. Results To issue 138 questionnaires with 119 effective questionnaires , the treatment of drug utilization rate from high to low are： Chinese herbal medicine, non -steroidal anti -inflammatory drugs （NSAIDs） , total glucosides of paeony capsules, disease- modifying anti- rheumatic drugs（DMARDs） , glueocorticoid, antibiotics （not minocycline） , oral bisphosphonates, mino- cycline, anti- tumor necrosis factor-ct antagonists, compound glyeyrrhizin for injection, the utilization rate were 89.9%, 77.3%, 67.2% , 61.3% , 55.5% , 48.7% , 35.3% , 48.7% , 26.1% and 22.0% , respectively. After treatment, 57.1% patients have good satisfaction with bone pain control. Drug satisfaction scores from high to low in turn is： non - steroidal anti - inflammatory drugs （NSAIDs） , glucocorticoids, Chinese herbal medicine, anti - tumor necrosis factor -α antagonists, disease - modifying anti - rheumatic drugs （DMARDs） , minocycline, antibiotics （ not minocycline） , total glucosides of paeony capsules, compound glycyrrhizin for injection, oral bisphosphonates. The satisfaction were 84.8% , 77.3% , 72.9% , 67.7% , 47.9% , 47.5% , 46.6% , 45.0% , 34.6% , 26.2% , respectively. Conclusion The SAPHO syndrome patients with bone pain control are not satisfied, only 57.1% of patients pain can be controlled. Non - steroidal anti - inflammatory drugs （NSAIDs） , glucocorticoids, anti - tumor necrosis factor -α antagonists and Chinese herbal medicine have better satisfaction. It is worth mentioning the utilization rate of Chinese herbal medicine were 89.9% , and 72.9% satisfaction, probably as a new way for the treatment of SAPHO syndrome.